I'm not sure I will ever get to taper, but as a 50 year old woman, I can say that the cosmetic side effects hurt at all ages. My hair is very thin. I have to restrict my caloric intake a lot to keep a reasonable weight, and then there is always that moon face. The only thing I have found that helps with the weight and face is exercising when I am able. People say I should be lucky I can sit up in a chair, but I don't feel luck y to have to take steroids. And I think it is OK to admit how you feel about the drugs. Self esteem problems, though greatly lessened over time, are really the same as teenage ones, and you don't need to apologize for your feelings, which are particular to the context of your life as a teenager. I also feel sad not to recognize my face in the mirror, though the people around me say I'm still myself. So, I hope I've validated your feelings without making you feel worse. The answer to your question is that once I got down to 35-40 mg of prednisone a day, my body started returning to normal. I wish you safe tapers and symptom free days ahead! HUG!

P.S. (I was always very hairless, but I wax my upper lip and am thinking of waxing the sides of my face. Waxing the upper lip made me feel better.)

Don't apologize for being frustrated with these side effects! It's understandable that you don't like the changes to your body. And if you just need to vent, you're always welcome to do that. We all understand.

I was on a high dose of prednisone for three months, and I had less side effects from it than others do. I didn't gain much weight and I had a little moon face but not too bad. I found that if I avoided sugar I felt okay but if I ate sugary foods or a lot of carbs, then I felt really hungry. And I agree with Elinor, exercise can help with both the weight gain and water retention...if you can exercise, even going for a walk might help. And avoiding salt would help with the water retention too, I believe. When I tapered I went to an every-other-day schedule, and I found my side effects noticeably decreasing by the time I was down to 60mg every other day.

I get IV steroids with my monthly IVIG, and I've noticed that for a day or two after my infusion, I can tell that I'm retaining water because whenever I'm walking around I can feel the skin on the back of my neck jiggling slightly with every step I take. Which doesn't exactly make me feel sexy. The steroids have greatly thinned my hair too. Having a disease like this, there are a lot of adjustments we have to make, about physical appearance and identity and things like that, and none of them are really easy, even if having thin hair definitely not as bad as needing a wheelchair, for example. Having thin hair or moonface is just the shitty icing on the shit cake. :)

We understand.
I noticed improvement at 40.
You will be there before you know it.
Things that helped me were
1. cut out salty foods. Prednisone had an effect on retention of water.
2. cut out sugar as best as you can.
I ended up going to weight watchers and lost weight because one day I wanted to eat the foods I saw on ads on the computer. I knew I was in trouble.
And that sounds like a big taper to me. This is challenging. So if you are at 60 you will get down to a point where you will look more like yourself. And if you feel crazy.....I did too. I was on 60 also. Glad to know you are at 50. It may take some time(week or 2)
to adjust. Buck through it. You will be ok.

Take care and we care
Ann

Thanks for sharing Annie. I have noticed that my skin on my arms gets scratched really easy. Plus, they bruise really easy. I am older and on aspirin, so initially I thought it was just the aspirin. The doctor told me today that it was the Prednisone too. My arms have several black and blue marks.

BTW, they lowered my dose from 30mg to 25 mg per day.

I also have insomnia, but am not sure if it is all Prednisone. It is hard to tell.

Thanks again for sharing.

Annie, I understand how you feel. It s not easy on us when our looks change in such a short time. You are a very special young lady. Very mature and wise for you age . We are here for you anytime that you need to vent. Like Ann said it will get better. Friends, Barbel

Annie,
I know it's tough. My meds have given me 40 pounds I never wanted to carry around. (I'm not even on steroids...yet)
My heart goes out to you as a young person. You are so much more
than what you see in the mirror. Remember that. You are precious
and uniquely made. Keep your chin up and remember that being alive is worth some of the cost.
Carly

Be careful if you are taking steroids with aspirin. You can end up with a major stomach bleed from an ulcer. The 2 drugs are contraindicated when put together. Always check any NSAID's that you take with pred. Bruising is very common and my skin was so thin I carried a box of bandaids in my purse because if I brushed against something I would start bleeding. I noticed the side effects were less at 20 mg.

Sorry you are having the prednisone side effects. They are hard to deal with -- the outward ones as well as the inward ones. If it helps any, most of us look back to our HS days as probably the most difficult and maybe terrifying period that we have ever gone through and really would never like to do it over!

We really have to adjust our lifestyle while on prednisone to try to keep the side effects from messing up our health long term. It is too easy to throw in the towel and feel sorry for one's self--OMG I have this terrible disease so what does it matter if I get fat, eat junk, don't exercise and we quit on ourselves.

For most folks MG will get under control, and you will get your life back, so it is good to try to keep a level of fitness and weight control during the treatment with the idea that this is a temporary setback and soon life will be OK again. That is true for most MG patients. If you keep thinking that this is not going to define the rest of my life it helps.

I tried to keep my sense of humor during my high dose prednisone treatment period. You can see a funny prednisone video at
https://www.youtube.com/watch?v=gYlgtloOztU Understanding what prednisone does and separating IT (prednisone side effects including the mood changes) from ME helped me cope.

It helps to remember that for most folks, the initial dose used to get MG under control is much higher than the "maintenance" dose used to keep it under control--and often MG patients switch to alternate meds after the prednisone does its thing helping to reduce side effects even more. Once MG is under control, our docs push us to taper down as we try to find the lowest effective dose that works.

Good Luck

Annie
Sorry to hear that you have this dease.Now I gained at least 20lb,s and mostly water.I also was eatting everything.When i got down to 20 mg prednisone one day and 10mg the next I started feeling better then when on a diabetic diet stopped drinking pop now water and unsweetened ice tea.also was put on bumex a diurtic which I now take very prn.I have gone from in the 220,s to 180,s and feel a lot better.
Just hang iin there and hopefully you will start feeling better about everything.
Chuck

Thanks everybody. hearing that for most it does get better is certainly making me feel a bit better about my current situation.
Vieve and Elinora, I do try to exercise when I can. which is just walking or running errands with my mom. anything to get me off my butt and moving. I feel like with mg you either use your muscles or lose them (faster than the average person).
I also eat a fairly healthy diet. ive been really good about cutting down on sugar but I crave salt a lot more. I also struggle to stay hydrated which is so important.
Russ, your posts are always so helpful and you clearly seem to be a prednisone expert. I do try to find happiness and humor in my life to help me get through but its not always easy.
Barbel and Carly, your posts made me feel a lot better. the things you said were so kind and I think I really needed to hear them.

Thank you all so much for your comments
Annie

Thanks Maricak, I do bruise easily. I cut down to 81 mg for most days.

My goodness, what a huge burden you carry at such a young age. I'm so sorry that you have to go through this disease at any age but particularly as a teen. Teenage years are brutal and quite important in shaping your views and experiences in life. I think that you are handling it with a lot of grace and care which hard for anyone to do, much less a teenager. I think someone else mentioned that you were wise beyond your years and I agree completely. You are very smart and really seem to understand life. I know 65 year old people that aren't as wise as you. You should be proud because you are strong (Okay, maybe you can't bench press a toothbrush but...) in spirit and really seem to have a handle on this MG thing.

I was on a max dose of 20 mg of prednisone for the better part of a year. I've had to use humor to get through the side effects. I laugh to avoid crying sometimes. I don't see anything familiar when I look in the mirror. I've ballooned from 150 lbs to 250 lbs, the acne is a killer for me and I'm always hot and sweaty even if I'm in the shower. lol

I finally weaned myself (with the guidance of my neuro) off of the prednisone about 2 weeks ago. I was hopeful that my face would go back to "normal" and my skin would clear up but it hasn't yet. I have several other issues going on though and I am still hopeful that I will soon recognize myself in the mirror.

I keep telling my husband that I feel like Fiona in the movie Shrek. She was beautiful and thin and then [POOF!] she turned into an ogre. I watched things happen so quickly to my body and I had absolutely no control over it. I've also taken very good care of my body up to this point and I'm finding it near impossible to gain any control over my body.

Please, please don't let what others say get you down. There are always going to be people talking about you and judging you. It doesn't matter if you have MG or not. They will always find something to criticize. That won't change in life, I'm sorry to say. The one thing that you can do is stay strong and keep your beautiful chin up. You are an amazing young lady and the people that love you know what you are really made up of. It's not what's on the outside that counts anyway. Truth be told, it's usually those with their own self-esteem issues that criticize the most. Keep laughing, smiling and living life with a sense of humor. You are doing a great job and we all care for you. We are here to vent to or ask questions or whatever you like. Please keep us posted though. We want to know how you are dealing with things. We are all thinking about you though. I hope you can enjoy your weekend too. It's just around the corner.
Hugs and Aloha to you!
Angie

p.s. Sorry this is so long. :-) I'm very passionate... lol